Teething pain reveals genetic disorder in 1 year-old boy

A dad-of-three has spoken of his horror after his 19-month-old son was rushed to hospital after his parents found him floppy and unable to move.

Phil Kerman, of Bransholme, Hull, said son Ronnie had been struggling with pain for some time, which he and wife Louise had assumed was simply teething pain.

‘We had seen a few little symptoms. He rested his head sometimes and cried a lot but we assumed he was teething because of his age.

‘Because he’s so young, he can’t tell you where the pain is or what he’s crying for.’

But the couple were left in shock when they found Ronnie unresponsive in his room.

‘I looked at him and the first thing I thought was, “he’s had a stroke”,’ said Phil, 39.

A dad-of-three has spoken of his horror after his 19-month-old son was rushed to hospital after his parents found him floppy and unable to move.

‘I picked his arm up and it just flopped. I put him on the floor and he couldn’t crawl so I called an ambulance.’

Ronnie was rushed to Hull Royal Infirmary and then onto Leeds General Infirmary (LGI), where doctors found he had two cysts on either side of a non-cancerous tumour in his brain and had suffered a stroke.

Following his diagnosis, doctors also found Ronnie had been living with Neurofibromatosis, or NF, a genetic disorder that causes tumours to form on nerve tissue.

The severity of his tumour has left the infant partially sighted, and he is still in hospital now since being rushed in last Friday, with medics continuing to monitor him.

Phil said: ‘We were blue lighted all the way to LGI and we’ve been here for a week now. When we got here he was rushed for an MRI and had his cysts drained of 20ml one side and 21ml the other.

Phil Kerman, of Bransholme, Hull, has twin sons, Ronnie and Robert, with his wife, Louise.

‘Today is the first day he hasn’t had a procedure done.

‘They’ve put some stents in his brain so that when they put a needle in it can drain the cysts, but they seem to be going down.’

On February 19, Ronnie will undergo an operation to remove part of the tumour before having a year-long dose of chemotherapy to shrink it.

Phil said: ‘He will have part of the tumour cut out and like a bypass on the arteries on his skull.’

Dad Phil said: ‘You can tell the doctors and surgeons really care. I have a friend in America who has started a prayer chain in New York for Ronnie and we’ve had 70 prayers so far.’

Although Phil himself lives with NF, it is a much milder form than Ronnie’s.

His parents, who also have a four-year-old daughter, Emily, say they are still in disbelief about what has happened to their young son.

‘I feel heartbroken and I’m blaming myself wondering if there was anything else I could do. It is all still very frightening and it is so heartbreaking,’ said Phil.

‘People are saying to me, “how have you found the strength?” But you have to. It’s been a very tiring and long week.’

The family have had an outpouring of messages and support since Ronnie was taken ill last week, for which they are very thankful for.

Phil said: ‘You can tell the doctors and surgeons really care. I have a friend in America who has started a prayer chain in New York for Ronnie and we’ve had 70 prayers so far.

‘I’m a big KR fan so I posted on the site last night that I was on my way to Leeds to see ‘Ronnie the Robin’ and explained what’s been happening and it’s had over 120 comments from people sending their love.

‘It’s lovely.’

WHAT IS NEUROFIBROMATOSIS?

Neurofibromatosis type 1 (NF1) is a common genetic condition that affects one in 3,000 people in the UK to some extent.

It’s caused by a genetic mutation that affects nerve tissue growth.

Around half of cases are inherited from a parent and the other half occur spontaneously.

Early symptoms include flat brown birthmarks, and lumps and bumps in unusual places.

It is also associated with mild learning difficulties, although most people with NF1 are otherwise healthy and live to a normal life expectancy.

There is no cure, however, surgery can be performed to remove the benign growths.